The Cares of Caregiving

Psychologist and author Dale Atkins on how to support a sick loved one —without falling apart yourself.

Expert Source: Dale Atkins, psychologist, author of Sanity Savers: Tips for Women to Live a Balanced Life (Avon, 2007), and frequent guest on the Today show and CNN.

When someone dear to you is diagnosed with a chronic or terminal illness, it opens a Pandora’s box of worries: What’s wrong? What’s the best treatment? What if he or she doesn’t make it? Just as vexing are the inevitable anxieties about your supporting role. You want to be present and useful — but how? What are the most helpful attitudes, the best things to say, the mistakes to avoid? Where does appropriate caregiving end and smothering and micromanaging take over? And how can you handle your own careening emotions while still helping? (For more on end-of-life discussions, see “Planning for the Inevitable”.)

Significant health crises are often occasions for selfless sacrifice and bonding in close relationships. But they can also strain them — and send caregivers into spirals of anger, self-blame, and exhaustion.

Barriers to Overcome

Feelings of inadequacy. “When a loved one falls seriously ill,” says psychologist Dale Atkins, “we worry that we won’t be able to care for them or for ourselves, that we lack knowledge and patience, that we simply won’t be able to cope with the enormity of the situation. And we can feel that whatever we do isn’t enough.”

Avoidance. Once we learn of an illness, we can be tempted to keep quiet about it over time, fearful of disturbing others and upsetting familiar routines. Atkins says avoiding the issue can deprive us of much-needed support and help.

Information overload. If we’re joining someone for visits to the doctor and trying to help navigate postsurgical explanations and aftercare instructions, it’s natural to become overwhelmed by all the unfamiliar data, notes Atkins. “And then add in the Internet and all the information available there, which is both a blessing and a curse.

Catastrophic thinking. It’s easy, says Atkins, “to make a catastrophe out of ‘what will happen’ — something about which we know little.” The unknown is scary, and we may be tempted to think about worst-case scenarios, dwelling on the experience of others with the same illness who didn’t fare well. “We say to ourselves, ‘My God, look what happened to Jane.’”

Overdoing it. “In our eagerness to help, we may forget that the ill person is still a person, with dignity, capacities, and strengths,” says Atkins. We may do too much, talk about them with others as if they were not present, or try to keep them from doing things they’re perfectly capable of.

Martyrdom. We may devote so much time to caregiving that we deny ourselves any pleasure or self-care. If we do things for ourselves, or seek support for the difficulties of caring for someone else, we feel guilty.

Strategies for Success

Realize that change is coming. “Lots of changes will be occurring in your life and the life of your ill loved one, and you need to adapt to that,” says Atkins.

Plan ahead. Atkins distinguishes between catastrophic thinking and sensible planning for possible futures. “There probably will be in-home arrangements, scheduling, relationship issues, money, and other things,” she says. “Approach these after the initial shock of the diagnosis has worn off, so you’re not coming from the more primitive part of your brain.”

Get help with the changes. There are personal coaches who specialize in dealing with chronic illness, and professional organizers who can help rearrange a home for changing physical needs. When you can afford it, hiring guidance can be a great relief from the pressure to become an instant expert. Sometimes only a short time with a pro (who is also less emotionally invested in the situation) can be surprisingly productive. Hospital social workers are also excellent resources for services such as putting together a healthcare directive or finding residential care.

Share the feelings. “Frustration, sadness, disappointment, and worry are all natural feelings when a loved one is seriously ill,” says Atkins. “If you keep them bottled up, you’ll probably turn them into anger at yourself, the ill person, or a partner.” Sharing difficult and conflicted feelings with a nonjudgmental confidant will help avoid misplaced emotions and arguments. This is also a gesture of self-care.

Surround yourself with positive people. “When you seek support,” says Atkins, “seek it only from people who really care about you, who will listen to you, and who are helpful. Give a negative person, even if they are a relative or a close friend, another job to do — like running errands.

Listen. Atkins believes the single most helpful thing one can do for someone coping with illness is to listen — paying close attention to his or her worries, desires, and needs without arguing or offering immediate problem-solving feedback. Feeling truly heard is a major comfort to everyone and helps with healing.

Support his or her dignity. “When you’re talking with the doctor,” says Atkins, “be mindful of including your ill loved one every time. If you want to make an inquiry on your own, for example, first ask, ‘Is it OK with you if I ask a question about your meals?’”

Restructure daily tasks. “Find ways to continue to include your ill loved one in the routines and responsibilities of daily life,” says Atkins. This reinforces and honors his or her self-respect and capacities. Although your loved one may not be able to continue doing physical work, taking over some cooking or bill paying may be an option. An honest talk about what he or she is willing and able to do can set the agenda.

Maintain healthy routines. You probably already have favorite ways to reduce stress — walking, running, reading, making art — and Atkins strongly advises you to continue to make time for these pursuits. If your time is constrained by caregiving duties and you need to rearrange your schedule to find time, be sure to do so. When a loved one is sick, your stress relief is more essential than ever.

Laugh. “People forget to laugh in situations like this,” says Atkins. While we’re conditioned to see humor as disrespectful during a crisis, laughing together serves the sick and the healthy. “If they’re not too impaired, watch funny videos or movies with them; share jokes. It changes the body’s chemistry, gives a new perspective, and offers a release that nothing else can give.”

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In a new study by the Stanford University School of Medicine, 88 percent of the 1,081 doctors surveyed say they would choose a do-not-resuscitate status if they had a terminal diagnosis rather than be hooked up to machines and feeding tubes in their final days.